Among the skills I have picked up in the strange alternate universe of CLL -- I think many of us have earned a Junior Hematologist badge, for example -- is Armchair Urologist, or Parser of Piss.
I'm not sure which title I like better. It all depends on how the medal will look on my CLL Cadet uniform. I am providing a graphic of the hematology badge here, but obviously more work needs to be done on the concept, including a helmet to protect us from small children with hacking coughs.
However, I digress.
Readers may recall that hemolysis, the process by which autoimmune hemolytic anemia destroys red blood cells, can turn urine orange. This is because the red cells are red and their dead hulks combine with urine's natural yellow to make, as we all learned in first grade, orange. Several times during 2007 -- my annus horribilus of hemolysis -- I was alerted to sudden ill-fortune by the color of my urine.
On Wednesday it happened again. What floated in the toilet that evening was just too dark, too burnt, too damned orange. By Thursday morning there was no doubt about the consistency of the color. This wasn't a one-time thing; it couldn't be blamed on the contrast I had to drink for my CT scan Wednesday morning. Things had definitely changed for the worse. Marilyn verified my suspicions (oh, the wonderful stuff CLL couples get to share). I am sparing you photographic examples, dear readers, despite the age of the cheap and easy digital camera.
Since I had enough hemoglobin in reserve -- it was measured at 12.1 on Monday -- I did not hear the pounding in my ears that often comes when I am hemolyzing and the red cells are quickly declining. Which just goes to show that you need to multitask when looking for symptoms of hemolysis. Besides listening for pounding and examining urine, I would recommend being aware of subtle changes to your physical stamina -- for example, did you get more winded walking up the steps today than you did yesterday?
(Since we're discussing the art of hemolysis divination, this may be a useful aside: Although my hemoglobin was higher on Christmas Eve eve when I did hear the pounding, I had also had a lot of brandy and egg nog that night -- ho, ho, ho! -- and my theory is that the alcohol in my blood may have facilitated a thinning or enhanced an echoing that I might not have otherwise heard. This is yet another reason why getting drunk periodically is very important for those in my situation.)
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Meanwhile, back at Orange Elimination Ranch . . . A phone chat with Dr. Belle on Thursday led to doubling my dose of Decadron (dexamethasone) to 8 mg daily, as well as to a stat CBC Friday morning. Sure enough, my HGB had dropped to 10.9 in just a few days; my overall red count went from 3.48 to 3.05.
The good news is that the higher dose of Decadron turned my urine a lovely pale yellow again, something that would probably be named "whispering sunrise" in the Ralph Lauren paint section (what have we come to?) at Home Depot.
But I know all too well that it won't hold me for long. So I will be arriving bright and early Monday at Dr. Belle's office for some chemotherapy, which I prefer to think of as my Day of Hematological Beauty.
We're doing a round of RCD -- Rituxan plus cyclophosphamide plus dexamethasone -- the protocol advanced by Kanti Rai and his group to combat CLL and AIHA (as well as ITP). This is quite similar to what I had three rounds of starting in October 2007, just without the one baby dose of vincristine and with dex instead of methylprednisolone. Hopefully that will nail the AIHA like it did in the past (all the relapsed patients in Rai's study responded when treated with RCD again).
We'll be doing a second act, of course, and maybe a third. We may do more rounds of RCD, we will explore some other ideas, and I'm sure we'll go over the CT scan to determine how hard we feel we need to hit the disease.
The fact is that I can't rely forever on RCD or a variant to get me through the CLL-AIHA double whammy. I need to consider sterner measures that don't also have the effect of shooting myself in the foot, or at least not blowing the whole foot off. (I'm thinking that cadet uniform needs some lead boots.) Whether this means going with a traditional approach or something more experimental, only time, education, and discussion with my doctor will tell.
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Meanwhile, I'll try to fit in a little rest on chemo Monday. I plan to bring a good book, The Pirate Hunter: The True Story of Captain Kidd, an entertaining read about privateers and pirates at the turn of the 18th century. This is what probably started me thinking in terms of costumes for CLLers.
That, and my natural tendency toward eccentricity, which is only enhanced by the Decadron's powerful side effects. It should be said here that having had both dex and methylprednisolone (Medrol), I can see a definite difference in the mental as well as physical effects of the 'roids. Medrol made me just a tad worried about things. I remember staring into the mirror one night and wondering if my gums were receding. Dex puts me more into overdrive, in a positive and focused way. I'm getting less sleep, but, hey, have you noticed that there are a lot more posts to this blog of late?
Speaking of which, I am promising you an interesting post next week about something else that has happened in my life, torn from today's headlines. It tuns out that yours truly sort of knows someone famous, or that would probably be "infamous." A modern-day pirate, matey.
Aaaarrrghh! And I do mean aaaarrrghh (as opposed to aaaarrr), with all the frustration the word entails. Stay tuned.
Monoclonal B-Cell Lymphocytosis: A precursor to CLL (chronic lymphocytic leukemia) - This week I'm posting on the CLL Society website an interview that took place at ASH 2016 with Dr. Neil Kay from the Mayo Clinic in Rochester, MN where we...
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